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ASDMommyASDKid
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17 Jul 2017, 4:56 pm

DW_a_mom wrote:

"Enjoy these years." I am so glad someone said this. I feel the same way. The toddler and preschool years are so short. This is the time that you and your children should be enjoying each other as you are. Everything will become more intense and critical as your ASD child gets older, but right now ... you CAN enjoy him just as he is. Get to know who he is as he is, and enjoy it. Yes, intervention can be critical, but I would not allow it to take over. Let him be happy, and enjoy him as he is.



I am going to second (third?) this because really the amount of unnecessary stress that people put on you when the child is this age is astounding. I had a nurse at my son's first pediatric office on my tush to constantly try to make him do pretend play. Was this going to make him any less autistic? Nope. My son looked at me like I was a nutjob. He would occasionally imitate me, to humor me, but the exercise was fruitless because first-off the NT milestone goal is spontaneous creative play. My son humoring his mother made crazy by an idiot, was not going to help him want to do that. Secondly, if we checked off that box, what would it mean?

I gave it a shot occasionally, just to check readiness, but I decided not to drive him crazy with this nonsense, when he was learning so much more doing other things he wanted to do, like stacking blocks, reading, writing letters and other kinds of floor play.

And you know what, he did it on his own eventually, and then kept doing it. On his time table. The best thing we did was focus on what he was motivated to do, and where we had windows of opportunity, and what was fun.

Anyway, the point is, is that you are going to get a ton of unhelpful advice mixed in with things that end up working, and your job is going to be sorting it out, relative to what you think makes sense for your child. People are going to make you think that if you don't do every possible intervention (including ones with no evidence behind them) that you are not doing enough. If you are not panicked enough to other people's liking, they are going to judge you. But the honest truth is worrying doesn't help anything. Might as well have fun like parents of NT kids get to do, too.



byathread
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18 Jul 2017, 8:17 pm

Chronos wrote:
byathread wrote:
Any advice? I knew when my son was 7 months old that something wasn't right. I took him to the pediatrician and nine months later I got the official diagnosis. Even so, I was shocked and had him evaluated by an additional 2 specialists and everyone said the same. Fast forward 8 months, he has shown improvement but 'it's not enough'. It has been suggested that his twin, who is accelerated be sent ahead to pre-k so they can socialize with other kids. As for my ASD son, they suggested he might do better in the under 2 room (baby room). I am pretty devastated and unmotivated at this point. No matter how hard I try and what little he does improve it doesn't seem to make a difference to the clinicians. He will always be autistic, always be impaired, always struggle. So why bother? Just let him go into his own world. It certainly is easier and costs less money than trying to 'treat it.' I think I should be saving that money as it appears he will never be able to take care of himself. I wonder what will happen to him after I am gone. What steps have other parents taken?


I would not write your son off so fast. People on the spectrum develop at different rates than others, and often at different rates from each other. Some people may remain on the lower end of the spectrum forever, and some may become independent, functioning adults. My cousin, who has HFA, was nonverbal until she was four and my great grandmother took some effort to get her to start speaking. I know of individuals who were non-verbal until they were 8 or 9 and now hold college degrees and live on their own. Even if a person does remain on the lower end of the spectrum, intervention is always better than not, and often serves to enrich the person's life. I am willing to bet a fair number of children who were written off and institutionalized in the mid 20th century would not have been the vegetables they became had they actually received interventions. Even normal children placed in those institutions at a young age often developed significant developmental delays.

Your son is different but it's not the end of the world. He has the capacity to enjoy life just as much as anyone else and I think that's what is important.


Ha. I am not writing him off. ASD diagnosis or not I think he is just fine. He is certainly happy. Do know that I view my role as a parent to provide my child with best skill set I can to be successful in life (whatever that may be).

With the support of this forum I have re-centered and thrown myself back into the game. I do question the value of these follow up appointments. If all they are going to do is point out how my son is deficient I can think of a better use of our time.



byathread
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18 Jul 2017, 8:30 pm

bunnyb wrote:
I'm so sorry to hear things are so tough for you. I didn't have twins but mine were 15 months apart and Oh my gosh, it was tough. They do consume every ounce of energy. My oldest has HFA and wasn't like other kids. I didn't realise until he was about 9 months and my Mum sat me down and said "You know how he sits for hours and hours in front of the pantry organizing all the boxes, jar and tin? Well that's not normal."
It took me years to find the answer to why he was different because he has physical things too and the physical was all most people saw. An OT once recognised what was wrong and sent us to a psychologist who was completely useless. She did six sessions with him and just focused on his physical things. I took him to a child psychiatrist when he was 2 who decided the problem was my Husband and I were not expressing our grief at not having a 'normal' child and needed grief counselling. That was a load of shite. He had almost died when he was being born. We were just thankful he was alive. We didn't feel we had anything to grieve for.
Anyway, eventually we worked out he was autistic and had him assessed and he has HFA (not Aspergers) and that's who he is and that's OK with us.
When he was small and undiagnosed, he had so many sensory issues and because we didn't know why, and couldn't get help with them, I started to work on them myself. For example, he couldn't handle finger painting in daycare so I got some water based paint and had a hand shower installed in the shower and we started by painting the walls and when it got too much for him, he could wash it off quickly. From there I encouraged him to start painting me. When it got too much, he had control of the water and could wash it off. Eventually I got him to put a bit of paint on himself. It started with just one spot and he had to wash it off straight away. Gradually he built up to being able to have it on his arms, then legs, then body. It was slow but we got there and one day he was able to finger paint.
Everything I did when he was small was done without knowledge of why he had these issues, I just used first principles to tackle them. I do not believe therapists would have done better. I didn't see only negatives. I saw my son and I saw how special he was and everything I did, I did with the love only a Mother has.
You have that love. You can be the most important therapist. You just need to trust yourself.
Just because Dr's and therapists have a qualification doesn't mean they know anything about your son. You are the expert at that. Have faith.
Go with your gut feeling. If you feel something isn't right or going to work for him, don't be bullied into it. Yes it can be scary standing up to people who are certain they know everything and you know nothing, but it's worth it. Do it your way.
And a last bit advice, try not to let this rob you of these special years. They really do grow up so quick. Try to enjoy it. As Robert Brault said, "Enjoy the little things in life for one day you will look back and realise they were the big things." Looking back, not realising this was my biggest mistake.
My son is all grown up now. He won a full scholarship to a University overseas. He is studying law in a foreign language and showing the world that he is different but not less. He is awesome! I like to think growing up with parents who believed in him helped.
Take care and be kind to yourself :heart:


You are right. I was pulling up baby pictures and video and am sad at how fast my babies have grown. I do need to enjoy this time.
I have taken a similar approach to you regarding the sensory issues- they have mostly resolved on their own.
My intuition is that my kid is just fine. And I will continue to work with him to prepare for the life ahead of him- what ever that may be. As far as being scared of the experts they only thing I am scared of is the ramifications of what would happen if I punched them in the face for criticizing my baby. I did ask them if they have ever misdiagnosed anyone with ASD before. Oh they were so very smug and arrogant with their statement that they were experts.
And congrats to you and your son on what appears to be a successful launch!



byathread
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18 Jul 2017, 8:42 pm

ASDMommyASDKid wrote:
DW_a_mom wrote:

"Enjoy these years." I am so glad someone said this. I feel the same way. The toddler and preschool years are so short. This is the time that you and your children should be enjoying each other as you are. Everything will become more intense and critical as your ASD child gets older, but right now ... you CAN enjoy him just as he is. Get to know who he is as he is, and enjoy it. Yes, intervention can be critical, but I would not allow it to take over. Let him be happy, and enjoy him as he is.



I am going to second (third?) this because really the amount of unnecessary stress that people put on you when the child is this age is astounding. I had a nurse at my son's first pediatric office on my tush to constantly try to make him do pretend play. Was this going to make him any less autistic? Nope. My son looked at me like I was a nutjob. He would occasionally imitate me, to humor me, but the exercise was fruitless because first-off the NT milestone goal is spontaneous creative play. My son humoring his mother made crazy by an idiot, was not going to help him want to do that. Secondly, if we checked off that box, what would it mean?

I gave it a shot occasionally, just to check readiness, but I decided not to drive him crazy with this nonsense, when he was learning so much more doing other things he wanted to do, like stacking blocks, reading, writing letters and other kinds of floor play.

And you know what, he did it on his own eventually, and then kept doing it. On his time table. The best thing we did was focus on what he was motivated to do, and where we had windows of opportunity, and what was fun.

Anyway, the point is, is that you are going to get a ton of unhelpful advice mixed in with things that end up working, and your job is going to be sorting it out, relative to what you think makes sense for your child. People are going to make you think that if you don't do every possible intervention (including ones with no evidence behind them) that you are not doing enough. If you are not panicked enough to other people's liking, they are going to judge you. But the honest truth is worrying doesn't help anything. Might as well have fun like parents of NT kids get to do, too.


I really do think that someone needs to take a look at stress that is placed on the family when a DX of ASD is handed down. The most intensely stressful statement made to me was that every minute neural pathways were being laid down in his brain and every minute that he was allowed to space out/play alone/and god forbid sleep was a minute that was lost.

As God is my witness, the next person that tells me how critical it is for him to start speaking will get punched in the mouth. Fact, the NT twin is not speaking either and no one worried about that. At all. Fact, this is a multilingual household (45% Portugese; 45% English; 10% Japanese). Fact, only 1 of my 3 siblings spoke before age 2. Fact, he has 3 half siblings all of whom were diagnosed with speech delay.

So what I am willing to do is an ESDM/Floortime approach. I made mistakes when he first got diagnosed. I focused on the milestones. To this day the kid will not stack blocks for me (will happily do it for others though). The day I realized that mommy wasn't fun was the day I got over all his 'deficiencies'. We are going to enjoy life and let us see where this approach takes us.



byathread
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18 Jul 2017, 9:04 pm

eikonabridge wrote:
byathread wrote:
He will always be autistic, always be impaired, always struggle. So why bother?



Quote:
At the most recent appointment they did state there were no repetitive and restrictive behaviors observed.

This is a red flag. Please double check and make sure they (and you) have performed adequate observations. Repetitive behaviors is one of the most important signatures for autism. If your son does not exhibit repetitive behaviors (stims), I'd get extremely worried. If it is autism, then life is all good. If it is something else, I'd be more worried.


Can you expound upon this? I never really thought he had RRB and neither do his therapists. The ABA therapist says he did like to study wheels but she felt it was with a purpose (i.e. he was legit trying to figure out how they worked). In the interview although he pushed the car back and forth it 'wasn't enough.' He did like cause and effect toys (i.e. push a button and the toy would light up or make a noise). Even so he would do this for maybe 5 minutes. Honestly in reading the assessment of him their observed RRBs was really weak in my opinion.

The therapists will not challenge a diagnosis but I believe they think it is sensory processing disorder coupled with a speech delay.

Still, he does prefer to be by himself, takes a few minutes to warm up to others, can hand flap when overly excited, does toe walk some, and lost speech at one point. He doesn't point, follow points or gazes, or do a lot of imitation or imaginative play. However, this kid recently had tubes placed and has started saying words. I did tell the assessors that he had chronic fluid in his ears but I was told that chronic ear infections are what made the difference. Go figure. I thought he was just an introvert which is common in this family.

And I have read your other posts so I have a question for you and well, everyone really. The assessors told me that by definition autism was a lifelong disability and impairment. So I was not trying to be argumentative but I did ask since my son was neither disabled or impaired how could he have autism? (Boy you can only imagine the pitiful, patronizing looks I got). Based on your posts, you are happy, successful, in a fulfilling relationship, etc. So exactly how are you impaired or disabled? If not this, then what exactly is it that they want from Autistic people?



bunnyb
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18 Jul 2017, 9:54 pm

Autism is a spectrum ergo the way it effects individuals is a spectrum too. Some people will have more obvious deficits and difficulties than others.
I come from a family of high functioning people. My Uncle has two doctorates, one in an obscure branch of physics and the other in theoretical chemistry. His son, also autistic, was head of cyber security for a large corporation at the age of 22. My son is knocking it out of the park at Uni. We are all odd bods but not to the point any of us would consider ourselves disabled. That's not to say autism is like that for everyone.
Autism is a condition that's not terribly well understood so anyone who claims to be an expert is claiming expertise in something that nobody really understands and what they 'think' they understand changes over time. Tony Attwood is a big name in Autism and he has changed his point of view over the years. Originally he thought that children with autism didn't particularly experience emotions. More recently he's done a 180 and now says children on the spectrum feel things very deeply and can shut themselves away due to the overwhelming nature of their emotions.
Understanding autism is a work in progress and has a long way to go. My experience of it is it doesn't have to be disabling. It can be for some, but not all and I think the current thinking that it HAS to be a disability is not helpful. All people will struggle in some areas. I've yet to meet one single perfect person, autistic or otherwise.


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ASDMommyASDKid
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19 Jul 2017, 12:09 am

byathread wrote:

I really do think that someone needs to take a look at stress that is placed on the family when a DX of ASD is handed down. The most intensely stressful statement made to me was that every minute neural pathways were being laid down in his brain and every minute that he was allowed to space out/play alone/and god forbid sleep was a minute that was lost.



Ugh. To me that is just nuts. First-off NT babies are not made to work 40 hours a week (or whatever they were proposing) and they are laying down neural pathways and pruning pathways, too. Secondly, not every minute of everyday has to be social. of course, you need to interact with the baby, but not every second. Next is the assumption is that you have this short window of opportunity to mitigate the negative effects of autism and if you lose it, you can never improve. This is ridiculous. Autistic people develop at their own rates and it does not match the NT milestone time schedules. Autism, by definition involves a developmental delay and I have always viewed that as meaning a larger window for growth. I have seen nothing that indicates you need to make insane progress in everything that may be a negative issue within an immediate 3 yr - 5 yr span.

As far as why it is a disability, I agree with bunnyb in that it is a spectrum and the effects vary. There are strengths and weaknesses and some of the features like poor communication skills can adversely effect functioning in the NT world. There are also strengths like hyperfocus on special interests which can mean quick absorption, excellent retention and heightened creativity within a specific or more than one specific subjects.

Like most things in the DSM, if you get a diagnosis it implies that you are having issues functioning -- or you would not get one due to sub clinical levels of the disorder. Many people who are described as cured (and who were not misdiagnosed) typically acquire enough coping skills to function well enough to shed the label. They are still autistic, but not struggling enough to maintain a diagnosis. So, it is a lifelong status, regardless, because the person is still not NT.

In terms of the very young, a diagnosis means not hitting certain milestones involving language and communication and having other correlated characteristics like stims that are in the rigidity category. Babies and toddlers are not usually required to maintain a lot of responsibilities, so to say they are having pragmatic functionality issues sounds pretty silly, so they don't speak of it that way. Usually they talk about speech or other communication/social delays.



Rob56
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Yesterday, 7:13 am

Do not isolate them, let communicate with their kids, be happy, experience different emotions.
When studying in school and college, I'm pretty sure they could make that, it won't be easy but they'll cope with everything. There so many services which will help them, you can go to the website and see for yourself. Just try to treat them like normal kids.



eikonabridge
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48 minutes ago

byathread wrote:
eikonabridge wrote:
[
Quote:
At the most recent appointment they did state there were no repetitive and restrictive behaviors observed.

This is a red flag

Can you expound upon this?

Kids may have other issues besides autism. That's my concern. I understand autism. The analogy in physics is what we call a "renormalized field." I won't get into that, but you could look at the "dewdrops on a leaf" analogy: larger and larger dewdrops start to form, leaving many spots on the leaf dry.

http://www.eikonabridge.com/AMoRe.pdf

In terms of autism, that means the entire brain undergoes a process of maximization of contrasts. Many spots become void (e.g. social and verbal areas), and some spots receive enhanced attention (e.g. sensory issues, specialized interests, repetitive behaviors, etc.) So some kids are extremely sensitive to noise, or to the flickering of fluorescent light. Now, that's the brain of an autistic child. Development means new neural pathways (in the sense of software connections: the hardware connections are all there, there is no problem). If developed properly, eventually all the necessary connections will be established in the brain. The key is to understand the nature of the brain of these children. Don't force verbal, social, behavioral skills onto these children: it's counterproductive. If you start instead from their interests, what make them happy, and develop their neural connections from there, you will succeed in reaching even into their verbal, social, and behavioral areas. Very simple. It's been known for thousands of years in many Eastern religions/philosophies, actually, nothing new there. You don't need quantum physics to understand all that. In short, as long as it is autism, there is a way to raise these children. The path is a bit unusual from neurotypical person's point of view, but once you understand it, there is no mystery about it. I always tell people that my son learned all the skills he'll ever need to learn from elevators, and then some. People would scratch their heads at my comments: they just can't see how elevators can do something, such as to help my son to eliminate his sensory problem about wearing hats. Long story, but my son learned to talk, to write, to draw, to type on computers, to do math problems, to get rid of quite of few sensory/rigidity problem, to do computer programing, to initiate conversation with strangers, to socialize (we have an elevator riding club, now), and now to write Chinese characters. All from elevators.

Now, if the child doesn't exhibit the typical focus on specialized interests, then it may not be autism. Or it maybe something else on top of autism.

Quote:
The therapists will not challenge a diagnosis but I believe they think it is sensory processing disorder coupled with a speech delay.

There are other causes for speech delay. Bilingual families very often have children with speech delay, for instance. Same with children with hearing problems.

Quote:
However, this kid recently had tubes placed and has started saying words.

So he did have ear infection issues, I guess? See, in all the testings on autism, they also check, and check again, on children's hearing. This is because hearing issues can also cause some autism-like symptoms. When children have hearing issues, guess what? They'll rely more on their visual cortex (which is a forte of autistic people), which leads to autism-like symptoms.

Quote:
The assessors told me that by definition autism was a lifelong disability and impairment.

See, one feature about autistic people is we tend to look at people from a third-person's point of view. (Some of us don't even use personal pronouns.) We don't understand the concept of obedience/servitude in front of authority. We view everyone as an equal. My point is, the assessors have a definition about autism, and I have mine: "Autism means unmitigated auto-feedback due to an over-connected brain." Unmitigated? You mitigate it, you develop the children properly, and you'll have happy and smart children.

Quote:
Based on your posts, you are happy, successful, in a fulfilling relationship, etc. So exactly how are you impaired or disabled? If not this, then what exactly is it that they want from Autistic people?

I am still happy and successful everyday. Everyday I look at my children, and I feel sorry for other autistic children out there. (I do hang around regularly with other families with children on the spectrum.) A lot of people in our society don't understand autistic people. They want to drive a square peg into a round hole.

As an example: look at some of the postings here in this forum. Many responders would start their replies with a praise to original posters, to provide encouragement. To make people feel good and welcome. To soften the ground, so to speak. That is a neurotypical behavior. It's all about manipulation. Two years ago or so, people would jump on me for not doing the same. See, neurotypical (or neurotyipcally brain-washed) people like to manipulate each other. When people behave differently, they get disturbed. Instead of acceptance, they start to label people as sick/disabled/impaired. See, I've looked through the past postings of many of these people. And guess what? They are neither successful nor happy in their lives. And they want me to follow their model of misery? No thanks. Ha ha. I much prefer to keep my happy life and my children's happy lives. Fast-forward two years, and many of those forum members are gone (especially moms that enjoyed praises from each other, heavily used drugs on their children, and posted detailed violent behaviors of their children for the whole world to see). Those that remain here have become more civilized and have given me peace, as they should. I am still a direct person everyday. I am still happy everyday. Moreover, my wife (a neurotypical person) always tells me that she is becoming more and more direct with other people. She would joke that she is becoming an autistic person. When I prepared some PowerPoint meetings to address issue with other people, I would consult with her on whether I could be too harsh in my wording, she would cheer on my side and tell me to be myself. It's totally interesting to see her attitude change: 10 years ago, she was always the person to hold me back, to pull me back. Today, she is the person that tells me to go for it. And truly, we are so much happier today than 10 years ago. It feels great to be understood.

So, my point is, don't rely on other people's words too much. You are your own authority figure. Other people can be wrong. And that is what I tell everyone. And that is what I tell my children. I've always treated my children as equal-rights human beings. Why would I label someone as sick/impaired/disabled when I know they are smarter than I am? Why would I label someone as sick/impaired/disabled I know that one day they'll grow up to be my teachers? Ha!


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